Published on June 23, 2016, By Lexi de Coning

You may have heard about Irvin Rosenfeld; he’s appeared on numerous television shows and done countless interviews with journalists in his time. And it’s no wonder: he’s the longest surviving federal medical marijuana patient.

But his contribution to cannabis advocacy is not just his surviving a debilitating bone disorder and receiving tins full of cannabis cigarettes from the feds. He’s also a successful stockbroker, spokesman and board member of Patients Out of Time, and has published an autobiography about his long history of cannabis activism.

Above all, he’s a gregarious character with seemingly endless optimism and passion, and a champion for the medical marijuana movement in the United States.

Irvin’s History with Cannabis

At the age of ten years old, Irvin threw a ball during a Little League Baseball game only to find that his arm was suddenly paralyzed. The paralysis was temporary, but three days later his parents had taken him to the Boston Children’s Hospital, where he was diagnosed with “multiple congenital cartilaginous exotosis.”

This rare medical disorder causes lumps and spurs of bone to grow out from the skeleton, resulting in excruciating pain, limited mobility, and uneven growth of the limbs. While the bony tumors are not necessarily cancerous, they can be fatal. In Irvin’s case, certain tumors could have turned malignant over time; over the next eleven years, he would undergo multiple surgeries to manage his condition. Because of his limited movement – and schools not wanting the liability of something happening to him on school grounds – he was homeschooled for 5 years.

When he got to college, he was determined to get out and make friends. He’d never experimented with drugs before and couldn’t understand why others would. As he said in our interview, “why would a healthy person use an illegal drug, when here I had to take all these legal drugs? You name the drug, I had prescriptions for it.” But when some fellow students invited him to “drink some wine and smoke some pot,” he decided to give it a try.

“I didn’t see it harming them at all … so for the first time in my life, I decided to give in to peer pressure and try it … and I tried it and nothing happened.” In fact, Irvin thought his peers may have been self-inducing their high, as he felt no effects at all. They assured him that he wouldn’t feel much the first few times, so he continued to have the occasional social toke.

One day, however, he sat down to play a game of chess. This was not something out of the ordinary, except for one enormous realization: “it dawned on me that I had been sitting for thirty minutes. And at that point, for the last five years, I couldn’t sit for more than ten minutes…And it dawned on me that I hadn’t taken a pill for six hours. Well hell, how was I able to sit for the first time?”

“I looked at this piece of garbage [the joint], because to me that’s all marijuana was – garbage – and I thought, this is the only thing I’ve done differently: I’ve smoked this garbage.” By accident, Irvin had discovered a truly effective pain-killer that eased his symptoms, and his lifelong passion for medical cannabis was born. He called his orthopedic surgeon, as well as a great-uncle and another uncle (both of whom were doctors), and his sister (who was head of Nuclear Medicine at Duke University) – but none had heard anything about medical cannabis.

Irvin researched the issue, and discovered that cannabis had in fact been used medicinally in the US until the early twentieth century. He “went out and actually bought some pot” and began experimenting on himself – taking it for a few weeks, then stopping for a week, and repeating the cycle a few times. In his experience, his pain and inflammation were alleviated when he was consuming cannabis, but he was worried that it was only a matter of time before he’d be busted.

Through his research, he also came across the government’s one-and-only federally-allowed marijuana grow operation at the University of Mississippi (at the time of writing, this facility remains the sole source of all cannabis used for research purposes in the country). With the encouragement of his doctor, Irvin started putting together his own scientific study on the medicinal benefits of cannabis. He recalls his motivation: “I wasn’t a criminal; I was a patient … my disease is so rare, it’s not like it’s going to open up a Pandora’s Box…of course I was very naïve about the government; I thought the government could help us.”

Relationship with Robert Randall

Irvin continued to accumulate research throughout the 1970s, and decided to drop out of school to take on the federal government. After all, it seemed ridiculous that he could get morphine from a doctor, but not marijuana. However, the government continued to stonewall him and, as he eloquently puts it, the FDA “didn’t do shit.”

Around 1977 he heard about Robert Randall – the first federal medical marijuana patient in the US. Randall had won a landmark lawsuit in 1976, when he argued against charges for growing cannabis on his porch. Because he was using the marijuana to treat his glaucoma, he won the case and the right to consume medical cannabis. According to Irvin, the Feds told Randall to “go home and shut up” after his big win. Instead, he became a vocal advocate for medical marijuana and started touring college campuses. In an attempt to stifle his message and prevent access to his medicine, the government offered Randall’s doctor a grant to work at Duke University – essentially depriving Randall of his prescription. With pro bono representation from law firm Steptoe & Johnson, Robert Randall and his wife Alice sued the government in 1978; within a day, federal agencies put a gag order on the case, and settled out of court by starting the Compassionate Investigational New Drug (IND) Program, of which Randall was the first patient.

Irvin went to see Randall speak at an event, and introduced himself after the talk. He told Randall about his own battle to legally access medical cannabis, and Randall encouraged him to use his study to get into the IND Program. With the help of the Randalls, Irvin refined his study and submitted it to the government.

Randall also urged Irvin to testify in Virginia’s state hearing to consider medical marijuana. Despite his fears of being arrested, Irvin did testify, and went on to lobby for cannabis in his home state. In 1979, the Virginia General Assembly decriminalized medical cannabis for cannabis and glaucoma – and Irvin’s study and testimony were a crucial part of that decision. From there, his story was picked up by the media and he became a public figure.

It was only in 1982, however, that Irvin presented his own case to the government (assisted by UVA law school), and finally won the right to legally use medical cannabis after five years of struggle. Together, Irvin and Bob (as he affectionately refers to Randall) decided to use their fame and leverage to keep educating the public about medicinal marijuana, and helping other patients in need. Unfortunately, the Compassionate IND Program was shut down in 1992 and stopped accepting new patients. “Bob and I didn’t like that at all,” Irvin recalls. “It should be a federal program, it should be federal law.”

Federal Joints, Getting High, and Big Pharma

One of the amusingly surreal parts of Irvin’s incredible story is that he receives tin buckets containing hundreds of pre-rolled cannabis cigarettes from the government. Six tins are shipped from the University of Mississippi to his local pharmacy at a time, although Irvin picks up only one tin every thirty days – he smokes about 10 joints a day. The freeze-dried joints need to be rehydrated, and unfortunately the cannabis is years old. He’s often pictured holding one of these enormous tins, and he recalls that the first time he received his medicine, he had to pry the lid open with a screwdriver. Nowadays, he also vapes on occasion – making it easier for him to consume his medicine through the day and consult with his clients.

Interestingly enough, Irvin maintains that cannabis has never made him high; it simply alleviates his pain and inflammation. When I asked him if he’s tried other strains of cannabis in states where medical or recreational cannabis is legal, he laughed. He admits that, “when you got a medical condition, you want to know when there’s other cannabis out there that might be beneficial” but that he only smokes the cannabis he receives from the government.

I asked if he still consults his doctor regularly, and whether or not he’s been used for any official studies. As it turns out, he still sees his physician every six months, and they are still sending reports to the federal government with every check-up. As someone who has been smoking cannabis every day for 45 years – 12 years illegally, and a further 33 years on the federal program – you’d think he’d be a prime candidate for a long-term study, but apparently this is not the case. “We’ve now sent the government sixty-six reports, and I don’t think the government’s ever used one of them.”

I also wanted to hear his thoughts on the burgeoning cannabis industry, not only from his perspective as an activist and patient, but also as a stockbroker. What could the future of legalization look like in this country? “What I would like to see is people having the right to grow their own – it’s that simple.” Growing your own, in his opinion, would help people who can’t afford to pay dispensary prices for their medicine, and allow patients to find the strains that work best for them.

“As far as Big Pharma getting into it, that would be – I think – the worst thing … Big Pharma is going to grow pot, maybe even three different strains: low potency, middle potency, and high potency. And that’s what you’re going to get, which is not the best medical situation. Whereas, if you’re going to a dispensary that has forty different strains, then you have a better chance of getting a strain that’s going to be beneficial for you. You’re going to be getting medical cannabis; you’re not going to buy pot. There’s a difference.”

“I think [Big Pharma is] just going to care about the money … Big Pharma doesn’t want to allow you to grow your own medicine – because then they can’t sell it to you.”

Getting Involved

With all his years of experience, I asked Irvin what advice he has for other cannabis enthusiasts who want to get involved in the legalization movement.

“First I’d tell them to get a copy of my book…this way they would learn the history. It talks about my history, but also the history of the movement. They really need to learn the history.”

Next, Irvin suggests talking to close family and friends about the issue. “You don’t want to ostracize yourself from your family; they’re your biggest supporters. Win them over first. You win them over, then try to win over other people. But if you can’t win your own family over, then you’re going to have a hard time winning anybody else over.”

“And the most important is: don’t put yourself in harm’s way. I never suggest anybody doing something if it could cause them problems. And that’s [including] in the workplace. I mean, luckily I’m in a business now; my firm understands, and so I don’t have a problem. But a lot of people could have a problem. And especially if they’re in a job where, if they test positive, they would be fired. So if you’re talking about trying to further medical marijuana, they could do a drug test on you and you could lose your job.”

Instead, he suggests getting involved with local state legislature, and contacting the editorial departments of local newspapers and media outlets.

Final Impressions

There’s no way to really sum up Irvin’s contribution to the legalization movement in the US in a single blog post. He has been the topic of much media coverage, has written extensively on his own experience, and could fill many more articles, books, and talk-shows with his knowledge and insight.

Overall, however, his energy and enthusiasm for spreading the word about medical marijuana is infectious. He seems to be aware of how lucky he’s been in life – having access to incredible doctors, getting a good education, having the support and love of his family, and making intimate connections with friends like Bob and Alice Randall. But he also displays serious determination: not giving up in the face of failure and rejection, time and time again.

As we look to the future of cannabis legalization, it’s always good to consider those who’ve pioneered that path, and to see the kind of resolve it takes to keep fighting. Irvin Rosenfeld certainly inspires one to keep working toward a world where patients can access the medicine they need, without stigma or big business getting in the way.